EOS Awareness Week: Our Story of Living with an Eosinophilic Gastrointestinal Disorder (EGID)

National Eosinophilic (EOS) Awareness Week is here (3 – 9 August 2014) and I thought it was a good opportunity to share our story once more for those of you who are new to Alchemy Health & Wellbeing. Our Australian support network AusEE have posted this great video, giving a little insight into what it is like to live with an eosinophilic gastrointestinal disorder (EGID).

Just over 4 years ago I was a very pregnant first time mum-to-be, excited about this new little person we were about to welcome into the world. Within hours of her birth my husband and I knew there was something very wrong with our beautiful little girl. She was the picture of health on the outside, but was incredibly distressed. After 8 weeks of her screaming in agony 14+ hours a day and us sleeping no more than 2-3hrs a night, I finally cracked and begged the hospital to admit us. They proceeded to feed our daughter formula via a nasogastric tube and told me it was my fault she was so upset and losing weight because I didn’t have enough breast milk and was starving her. Even though I knew that this was not the case, it was an incredibly upsetting thing to hear in my sleep-deprived traumatised state. A week later she was even worse after reacting to the formula they gave her. I called the paediatrician and pleaded for him to help us. His answer to me was this….

“Maybe you just have one of those babies”.

I don’t know whether gobsmacked or flabbergasted is the most appropriate description of I how I felt in that moment! I knew right then that if we were going to get any answers we would have to fight for them, and fight we did! Eventually after many more months of seeing specialists we were finally given a diagnosis – an eosinophilic gastrointestinal disorder (EGID) called Eosinophilic Oesophagitis. Needless to say we immediately googled it…

What we discovered was that our daughter was reacting to pretty much everything, from food to flowers to fragrances to dust mites, the list goes on… She lived her first 2 years without being able to tolerate any foods at all. She survived purely on a special elemental formula, made of free amino acids and essential nutrients. Even the smallest trace of something supposedly non-allergenic, like 1/8th of a teaspoon of pear would result in projectile vomiting, pain, sleeplessness and distress for about 2 weeks. Now at the age of 4 we are fortunate to have around 25 safe foods. It has been an incredibly tough journey, loads of trial and error, but we have done everything in our power to provide a safe environment for our little girl to grow and learn. She blows our minds every day with how she takes things in her stride and doesn’t complain. For her fourth birthday she asked me to get a cake for her friends because she didn’t want them to come to a birthday party and miss out on cake just because she couldn’t eat it. She understands how horrible she feels when she reacts to something so she doesn’t ever complain about missing out on the foods that other kids take for granted. She is so brave and strong and I am thankful every day that I have been given the gift of being her mum.

This is obviously a very abbreviated version of the journey we have been on, but the important thing now is that due to careful management of this disease, we have a happy, healthy, beautiful girl and this path has allowed me to experience first hand what it is like to live with an EGID. My passion now is to combine this with my knowledge as a Naturopath, Nutritionist and Herbalist to help others going through this crazy, tough EGID journey. It has also given me the tools to assist people dealing with varied gastrointestinal and allergy related symptoms that are not necessarily caused by an EGID.

The following is some basic information to raise awareness about EGIDs during EOS Awareness Week.

Eosinophilic oesophagitis (EoE) is a chronic antigen-driven inflammatory disease of unknown origin, characterised by high levels of eosinophils in the oesophagus, oesophageal dysfunction and gastrointestinal symptoms.

Prevalence is often reported to be 1-­4 in 10, 000 but may be as high as between 0.5% and 1.1% of the population and increasing.